MS Conversationshttp://blog.mymsaa.org
The Official Blog of the Multiple Sclerosis Association of AmericaFri, 31 Jul 2015 12:00:35 +0000en-UShourly1http://wordpress.org/?v=4.2.3Staying Grounded in Thought When Your Mind Wants to Flyhttp://blog.mymsaa.org/staying-grounded-in-thought-when-your-mind-wants-to-fly/?utm_source=rss&utm_medium=rss&utm_campaign=staying-grounded-in-thought-when-your-mind-wants-to-fly
http://blog.mymsaa.org/staying-grounded-in-thought-when-your-mind-wants-to-fly/#commentsFri, 31 Jul 2015 12:00:35 +0000http://blog.mymsaa.org/?p=3681Continue reading →]]>Unexpected moments in life, whether they are an emotional or physical crisis can cause the mind to take off down the racing path of “what if’s”. You know, those questions that no one can answer, like “what’s going to happen” or “what if it doesn’t work out”.

It is easy to get swept up in a panic when those thoughts occur. So what can you do to bring your thoughts back down to earth? Try grounding yourself. No, not physically tying yourself to the ground, more in the figurative sense. Grounding practices have been used in the therapeutic treatment of Post-Traumatic Stress Disorder for years and are a helpful and effective technique to master.

The concept of grounding is the act of focusing your mind on a single object or action in order to ‘block out’ thoughts that are causing the panic feeling. Grounding techniques often use the five senses (sound, touch, smell, taste, and sight) to immediately connect individuals with the present moment.

Think of it as a distraction for the mind. There is no right or wrong to this practice as long as it works for you. It may take a few attempts to find a technique that is effective for you, however don’t let that set you back. Once you find what works for you, use this as your go-to technique.

Examples of Grounding Techniques:

Touch objects around you, and describe them (texture, color). For example, “I’m sitting on a yellow chair, and the fabric is rough; it’s itching my leg. The carpet is beige, and there is a brown stain in the corner.”

Run water over your hands, and describe how it feels.

Say the alphabet backwards.

Smell an orange or piece of fruit. Focus on the smell.

Perhaps you have been using a similar technique but didn’t know the psychological implication or terminology. What do you do to keep grounded?

]]>http://blog.mymsaa.org/staying-grounded-in-thought-when-your-mind-wants-to-fly/feed/0Benefits To Having a Hobbyhttp://blog.mymsaa.org/benefits-to-having-a-hobby/?utm_source=rss&utm_medium=rss&utm_campaign=benefits-to-having-a-hobby
http://blog.mymsaa.org/benefits-to-having-a-hobby/#commentsWed, 29 Jul 2015 12:00:21 +0000http://blog.mymsaa.org/?p=3668Continue reading →]]>Having a hobby can be beneficial to your health and well-being. Quoted by Albert Einstein, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” We all have talents. Some of them might be hidden though. If you see something on TV or in a magazine that interests you, you should give it a try. You just might need to try new things to uncover your hidden talents or passions.

Hobbies provide many benefits in one’s life. Below are several reasons why you should give a new hobby a try.

A hobby can:
• be pleasurable
• be gratifying
• be a great way to take a break from daily stress and give you a purpose
• be good for your mind, body and spirit
• promote eustress – which means healthy stress that we all need to remain feeling excited about life
• open doors to making new friends with shared interests
• bring joy to your loved ones by sharing your passions with them

So, give new things a try and be open to new experiences. You may find that hobbies can bring you added joy and fulfillment. Now is a good time as any to start!

What’s your hobby?

]]>http://blog.mymsaa.org/benefits-to-having-a-hobby/feed/0Describing MS and its symptoms – Community Feedbackhttp://blog.mymsaa.org/describing-ms-and-its-symptoms-community-feedback/?utm_source=rss&utm_medium=rss&utm_campaign=describing-ms-and-its-symptoms-community-feedback
http://blog.mymsaa.org/describing-ms-and-its-symptoms-community-feedback/#commentsMon, 27 Jul 2015 12:00:12 +0000http://blog.mymsaa.org/?p=3658Continue reading →]]>Living with an invisible illness like MS can be so difficult in so many ways. It is very common for people with MS to express frustration when it comes to getting others to understand how they are feeling and what they are going through. One of the contributors at MultipleSclerosis.net, Laura Kolczkowski, wrote an article about how she describes her MS symptoms, and a great number of our community members responded. Here’s what they had to say:

This is how I describe my symptoms

The MS hug I have feels like the cramp you get when you have a coughing fit and your stomach or ribs cramp up. Also it feels like Braxton Hicks contractions. I’ve lost the motor skills in my right hand. Writing with a pen has become nearly impossible. Those are a few descriptions I’ve used.

They keep asking why am I not smiling? I say, “well its hard to smile when it feels like your being boiled in oil, but I will try and do better.”

When doctors ask me how do you feel, I say, “Worse than yesterday, better than I will feel tomorrow.”

It’s very hard to explain. When asked, “how are you?” I usually say, “I’m doing okay.” Sometimes I say, “I’m doing well.” I wish I could say that with sincerity though! I just don’t want to seem like a downer all the time.

I get tired of hearing, “what do you mean you don’t feel so good? You look great.” I just smile and say thank you and stop talking. It’s just easier.

I say I am doing unreasonably well.

It’s really difficult to get people to understand

It’s so hard to get people who are around you to understand. There are times that I feel like just getting up and going to the bathroom is a chore. I’m sure people now see me as lazy. I was once not long ago full of energy and got stuff done. Now, doing the dishes or going for walks wipes me out for hours.

I don’t bother “describing MS & its symptoms” anymore.

I have been diagnosed with MS for over 9 years and my husband who has been with me all of that time still thinks I am faking the fatigue because some days I do have energy! He will never get it!

If you can communicate MS symptoms, how awful you feel, balance issues, fatigue etc., then people friends view us as “crippled”, less capable, and then THAT is our label. I am still looking for the happy middle ground. I am not a crippled person every day and that is the difficulty others have problems understanding, even some professionals.

My daughter in law had said to me, “if you just get up and try to exercise..” How could I when I couldn’t even walk? My son would say the same thing – there’s nothing wrong with you. I know somebody that has MS and they don’t look like that.

I don’t bother “describing MS & its symptoms” anymore.

When I am having a horrible flair and my speech and walking are affected, then people act like, “oh, poor baby”, but days that I “look” normal and sound normal, I hear, “well, you must be cured.”

‪ I also don’t bother describing MS symptoms any more. I just say I’m fine. Most people aren’t interested.

Unless you look absolutely pathetic a lot of people do not think anything is wrong with you. But I will still have a smile on my face and keep on being positive despite having MS. I am not letting it beat me.

‪I understand people think if they can’t see the problem you don’t have one. Lots of time my back hurts so bad I can’t stand it, but if they don’t see it they don’t understand.

I choose to not tell people that I’m sick.

I actually I have been accused of trying to be manipulative. It’s terrible.

There are some people in my family who, if I’m wearing a brace on my foot/leg, and they think I’m just wearing it to get attention.

This happens too many times. MS is truly invisible except to us.

What about you? Do people assume you are fine because you don’t “look” sick? How do you describe your MS symptoms to help people understand?

In July of 2005, I was in a deep depression. I had just been diagnosed with multiple sclerosis in June of 2005 and I was in the midst of an internal struggle trying to come to terms with being newly diagnosed.

I have a family history of MS. My aunt had MS and died when I was only four years old. Her MS progressed quickly and she left us at a young age. Watching me lose my ability to walk was particularly hard on my family who couldn’t help but think of my Aunt Loretta when looking at me. It was like they were reliving a scene from my aunt’s life that did not end well.

Those emotions that my family experienced in watching my aunt progress through her disease were awakened as I started to progress. Unintentionally, those emotions were transferred to me making it impossible to cope or come to terms with my diagnosis. So, I did what I always do, and turned to the pen.

You see, I’ve been writing since I was a small boy. Whether it was poems or short stories, writing was always therapeutic for me. So when my symptoms first presented themselves, I started keeping a journal of what I was experiencing.

At first, the journaling was very helpful for my memory. Then, as I got admitted to the hospital, I used my journaling to capture the patient experience. I had never been in the hospital before and between the pain meds and all of the tests, I wanted to capture all of this information in my journal so that I could refer back to it when I was discharged.

Little by little, my journal began to grow. I had captured my symptoms, my hospital stay, follow-up doctor’s appointments and now I was capturing my depressive thoughts as I struggled coming to terms with my new fate. I just had no idea what path in my life my journaling would take me on.

Then it happened. I found myself sitting in my pick-up truck at the beach, listening to the waves crash. All of a sudden, the song Moonshadow by Cat Stevens, popped into my head. I used the inspiration from that moment to carry me to Barnes and Noble.

At Barnes and Noble, I wanted to find a personal story of the diagnosis that I went through. I wanted to hear another person’s story, so that I would know that I was not alone. However, the books on the shelf were all technical or diet manuals about MS. Disappointed, I returned home and pulled out my journal.

As I flipped through the pages of my journal, I could recall my symptoms, my emotions, my fears. It was at that moment that I realized I was reading the story I was searching for. It was all in my journal. I would spend the next couple of years transforming my journal, into my memoir. Now, in an ironic twist of fate, Barnes and Noble carries The Dog Story: A Journey into a New Life with Multiple Sclerosis.

My journal has been transformed into the very thing I was seeking. Now it is a resource for other people who are experiencing the diagnosis I had faced all those years ago. Today, I continue sharing my journal though my books and my blogs. Sharing my story with the world has been the most rewarding and humbling experience for me. My best days are always when a reader reaches out to me and lets me know that my story helped.

Journaling doesn’t have to lead to writing a book or blog, but it is an important way to remember how you were feeling at a certain place or time in your life. How are you sharing your story? There is someone in your life right now who may not understand what you are going through. When words fail you, write down your thoughts and feelings and share with that person. If you can’t write, keep a picture journal or scrapbook. You will both be glad you did.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

]]>http://blog.mymsaa.org/journaling-my-story-ms/feed/0Sometimes You Just Gotta Laugh….http://blog.mymsaa.org/sometimes-you-just-gotta-laugh/?utm_source=rss&utm_medium=rss&utm_campaign=sometimes-you-just-gotta-laugh
http://blog.mymsaa.org/sometimes-you-just-gotta-laugh/#commentsWed, 22 Jul 2015 12:00:56 +0000http://blog.mymsaa.org/?p=3650Continue reading →]]>So I don’t think many people would argue the fact that there are some days that just plain stink! I mean those days where it doesn’t seem like anything can go right and you have a giant bulls-eye on your back that the universe is using to its full advantage. We find ourselves stuck in this limbo of imbalance and misfortune and it can be a real downer! So what can help pull us out of these moments that seem chuck full of calamity? How about laughter?

We’ve heard the saying ‘Laughter is the best medicine’ but how true is this statement? How can humor really heal or remedy a situation for us? According to an article in Psychology Today, laughter can help make you feel better, literally. It can decrease blood pressure and stress levels and positively affect mood and even sleep habits. Laughter causes physical changes in the body that helps to reduce tension and increase endorphins that lead to positive feelings.

Sure there will be times throughout life where a situation does not call for any kind of humor or laughing elements, but there will be other times that are so comical or ironic that you can’t help yourself but to laugh at the circumstances. You’ll notice that laughter can be contagious as well, a good kind of contagious, like smiling is, where you can’t help but to join in with others who are experiencing the joy. If you find yourself in a moment where you can treat yourself to a good, hearty laugh, take advantage of it, and feel free to spread the wealth.

Greetings from the Northeast Region! I hope everyone has been doing well and keeping cool in these warmer months. Now that we’re in the thick of summer, we take a bit of a hiatus with educational programming in the Northeast, but come early fall, we’ll be in full swing again. We have more than 25 patient programs in this region alone and dozens in each of the other regions as well that we’re starting to schedule for the last half of 2015, so please keep your eye on our calendar of events to see if there are any coming up in your area. Here are some topics that we at MSAA are going to be bringing to various cities nationwide this fall and winter:

“Hot Topics in MS,” which focuses on the latest research and news in MS

“Swim for MS” programs focusing around how swimming and aquatic exercise can benefit those with MS

“MS Educational Day for the Patient & Care Partner,” which is a series that will target both those with MS and the people that care for them, with care partners sitting in on a separate session to discuss how to take the best possible care of someone with MS and themselves

“Open Forum” style programs, which are much more informal and interactive, where the presenter will lead more of a discussion and focus heavily on Q+A from the audience

Larger “MS Education Conference” programs for patients and their families with multiple presenters at each program who will talk about their respective fields of expertise in the MS world (i.e. neurologists, nurses, PTs, OTs, etc.)

“The Day to Day Treatment of MS,” which will include a discussion on adherence & relapse management

“Research Advances in MS,” which will bring the most up-to-date information about what’s new and what’s in the pipeline to attendees

These are just a smattering of our educational offerings and we are constantly adding new cities and topics to our list, so please feel free to reach out to us if you have any suggestions for topics you’d be interested in learning more about! If you happen to be a resident in one of the states I cover, I hope to see you at a program this fall! If not, I hope you’ll visit one of my fellow directors in your region at a program near you!

* Lauren Hooper is the Northeast Regional Director at MSAA.

]]>http://blog.mymsaa.org/greetings-from-the-northeast-region-2/feed/0When Life Gives You Lemons, Make Lemonadehttp://blog.mymsaa.org/when-life-gives-you-lemons-make-lemonade/?utm_source=rss&utm_medium=rss&utm_campaign=when-life-gives-you-lemons-make-lemonade
http://blog.mymsaa.org/when-life-gives-you-lemons-make-lemonade/#commentsFri, 17 Jul 2015 12:00:15 +0000http://blog.mymsaa.org/?p=3622Continue reading →]]>We’ve all heard this saying or one of the many similar to it. Since we are focusing on “positivity” this month I thought it was an apt saying to start with. To me, this saying focuses on how we react to certain situations, usually negative, that we face often in life. A lot of the time, these situations are out of our control. The one thing we can control is our reaction to an event or situation.

I guess you can say that an MS diagnosis would be considered a bushel basket full of lemons. Well, now you have this big basket full of fruit! So you have two choices: You could put the lemons on your counter, stare at them from time to time and watch them go bad. Or, you can turn those lemons into freshly squeezed lemonade. You then get the best out of the fruit and turn a perceived negative into a positive.

It all comes down to you and how you decide to approach life’s challenges. While it’s sometimes difficult, tackling things with a positive attitude is a much better option than facing things with dread. I’d much rather enjoy a nice cold glass of freshly squeezed lemonade any day!!

]]>http://blog.mymsaa.org/when-life-gives-you-lemons-make-lemonade/feed/0Highlights from the 2015 Annual Meeting of the CMSChttp://blog.mymsaa.org/highlights-from-the-2015-annual-meeting-of-the-cmsc/?utm_source=rss&utm_medium=rss&utm_campaign=highlights-from-the-2015-annual-meeting-of-the-cmsc
http://blog.mymsaa.org/highlights-from-the-2015-annual-meeting-of-the-cmsc/#commentsWed, 15 Jul 2015 12:00:16 +0000http://blog.mymsaa.org/?p=3615Continue reading →]]>MSAA has posted a new online article providing highlights from this year’s Consortium of Multiple Sclerosis Centers’ Annual Meeting held in Indianapolis, Indiana in May. MS experts from around the country attended this exciting conference where the latest findings in MS research, treatments, symptom management, and patient care were presented.

Topics highlighted in this article include updates on MS disease-modifying therapies and findings from several cognitive and psychosocial studies. Various lifestyle factors such as diet, nutrition, and exercise are addressed in detail as well. The article also provides information on other topics of interest, such as diversity in multiple sclerosis, caregiver stress, gut microbiome, and more.

Unfortunately, things do not always work out the way we want them to. Marriages end, friendships change, and illness sometimes make our decisions for us. I often find myself worrying about the future, and thoughts invade my mind during stressful moments. Will I ever have the chance to swim on a beach in the Mediterranean? Will I see Europe the way I have always wanted? Will my children be embarrassed to be in public with me with my assistive devices? Boy, my thoughts can sure get dark at times, and anxiety can take hold and pull me out of reality very quickly if I allow it to.

Writing can be the most therapeutic experience.

No matter what challenge I am coping with, I find that if I sit down and pour those feelings onto paper, I am refreshed and renewed. It is much like traditional therapy with a counselor, except the paper is your therapist. The words are your medication, and the process of putting your thoughts and emotions into words is your cure.

I am a rather shy person, and some would say I am quiet and private. I have a few extremely close friends and family, but I keep my circle small. The interesting thing is, when I sit down to write I have no trouble communicating and expressing my feelings. Words are my favorite form of expression. Whereas spoken words leave your mouth and cannot return, written words can be erased, changed, and edited after you have reviewed them.

When coping with a chronic illness like MS, expression of feelings is incredibly important. It is so easy to feel alone and without friends who understand. Journaling and writing are great options for those who feel uncomfortable talking. “People who journal find a higher sense of self-awareness and are able to reduce anxiety and gain a sense of empowerment. Many people who struggle with deep emotional conflicts or traumas are unable to express their feelings in a verbal or physical way. Journaling allows a person the freedom of expression without fear of retaliation, frustration, or humiliation.” (http://www.goodtherapy.org/journal-therapy.html#)

My journaling experience has evolved into my blog, and eventually became my recently published book. My hope is that my writing will continue to help me express the feelings I have about each challenge with MS, parenting, and life in general. In addition, I may have the opportunity to continue to heal others through this writing.

In my practice as Family Nurse Practitioner, I encouraged my patients to journal when traditional therapy was not appealing to them. Some of my patients used writing as an adjunct to traditional therapy, and found it extremely beneficial. From the feedback I received from my patients, my suspicions about the therapeutic effects of writing were confirmed. I would encourage anyone coping with illness, trauma, death, or simply life stress to try jotting down a few ideas onto paper. The following are excellent resources for journaling as therapy:

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

]]>http://blog.mymsaa.org/journaling-as-therapy-for-ms/feed/2Mindfulness and Meditation for Multiple Sclerosishttp://blog.mymsaa.org/mindfulness-and-meditation-for-multiple-sclerosis/?utm_source=rss&utm_medium=rss&utm_campaign=mindfulness-and-meditation-for-multiple-sclerosis
http://blog.mymsaa.org/mindfulness-and-meditation-for-multiple-sclerosis/#commentsFri, 10 Jul 2015 12:00:13 +0000http://blog.mymsaa.org/?p=3607Continue reading →]]>“Meditation can help us embrace our worries, our fear, our anger; and that is very healing. We let our own natural capacity of healing do the work.” -Thich Nhat Hanh

Studies have continued to show how creating a mindfulness or meditation practice can assist those in reducing fatigue, depression, and anxiety associated with living with a chronic illness. Although the study outcomes are positive, individuals are still wary about starting a practice of their own, with fear that they do not know how to start. Starting a meditation or mindfulness practice can be made easier if you create a space in your home specifically for meditation, and commit to a practice schedule.

Creating a Meditation Space
We define the rooms in our home based on their activities. In the dining room, we nourish our bodies and prepare meals for the family. In the living room, we entertain guests or watch television. Defining a space in the home based on relaxation and mediation is important. You have a desk to pay bills, why not have an area to meditate. By designing a space for meditation you are mentally preparing yourself for the task.

You do not need an entire room to meditate, a corner of a room would suffice as long as this is a dedicated space that would not be cluttered or interrupted by others in the household. Decorate your space with images that bring you warmth and peace. Some choose to light candles or incense to promote this sense. The comfort of your space is important as you may be sitting for a long period of time. Pillows and blankets are often used to create a more comfortable sitting environment.

Practice
There are no rights and wrongs to a meditation practice as long as you achieve the desired outcome. Whether this meditation time is to relieve stress or become more in tuned to your body, you should be able to measure the outcome and notice a change. Start by slowly closing your eyes and focusing on your breath. Breathe slowly and deeply, noticing how each breath moves through your body. Don’t force your breathing, breathe as natural as possible; in through the nose and out through your mouth. Let your thoughts flow through you. Calming the mind is often the most challenging part of meditation, but becomes easier the more you practice. Acknowledge the thoughts as they pass through your mind and bring your focus back to your breathing.

Guided meditations can be found online, on CD’s, or even podcasts. Working through a guided meditation may be helpful to a beginner while trying to hone in and create their meditation practice. Remember, there is no right and wrong to this. It may be difficult at first, but that does not mean that you “aren’t doing it right”. Stick with it, start slowly, and keep track of your progress.

Have you developed a meditation practice in your home? How did you define your space?